Manila, Philippines; firstname.lastname@example.org
1961 / Class of '06 / Type: IgG Lambda / PBSCT / Remission, relapse / Chemo, mini-allo / Died 4-15-13
(Story submitted by his wife, Jean)
March 2006: My husband regularly donates blood to friends who needs them in the past. This year, my husband went for blood testing, to donate to a friend who was terminally ill of cancer, and was rejected by the hospital due to low RBC. We did several tests after that, CBC, Urinalysis, Chemistry Panel, etc etc. RBC- 3.63; HGB - 110; HCT -0.338. Protein in Urine +++ and Urine Occult blood +. We went to several doctors for diagnosis. We went to see a nephrologist due to protein in the urine. Our doctor diagnosed my husband with suspected "glomerulo nephritis" (damage to the filters of the kidneys). She gave us medication and my husband has to have a change in his diet, and lifestyle. We went to see her every month.
May 2006: End of this month, my husband and I had our regular massage, and after, he felt pain in his lower right rib. The pain was not so much as he was still able to play golf after that. We went to see an orthopedic surgeon and we did a rib x-ray. Nothing showed. And doctor diagnosed my husband as having inflamed muscle and gave him some medicine for pain. So we did not give the rib pain another thought.
June 2006: Our nephrologist checked our urine test once again and my husband's protein was down to "traces 0.15", but his RBC, HGB, HCT was still dropping. RBC 3.0; HGB - 97; HCT - 0.3; Occult blood in urine ++++. Our doctor referred us to a Hem-Onc. We went to see him after 2 days and he suspected Myeloma and did a bone marrow biopsy that day in his clinic (results to come in after 3 days). Our doctor said that his indication was the high globulin in the blood works, coupled with the low blood counts- Which most doctors take for granted. We had a skeletal survey that night and found out that my husband has permeative lesion on his left humerus (arm area). But my husband does not feel any pain on his arms. Only on his ribs which has no lesion at all. Weird! The next day we did some blood tests - CBC, Chem panel, Serum Protein Electrophoresis, Immunofixation Electrophoresis and B2 Microglobulin. All results turned out not so good.
My husband was diagnosed with MM on June 27, 2006. What a shocker!!! My husband, as most other MM patients are, is in very good health. You would never think he has cancer, or even sick. Our doctor referred us to another Hem-Onc, Dr. Francisco Lopez, who does BMT. BMT started in Manila only in 2002. So far they have done about 25 transplant patients already. We are going to see him next Monday for the first time. In the meantime, we are now packing our bags to go diving this weekend! We will be staged next week and we are hoping for the best.
July 2006: My husband started with Velcade + Dex on July 3. So far, so good. No side effects for now for the Velcade. But have slight side effect with Dex: palpitations. But after drinking a lot of water, the palpitations go away. Our doctor suggested we do 6 cycles of Velcade + Dex then proceed to do an autologous + mini allogeneic SCT. His MM was classified as IgG Lambda. Our doctor said he is in between stage 2 and 3.
August 2006: Jun started his 3rd cycle of Velcade + Dex yesterday. For the past 2 cycles, side effects were mostly from Dex. Mostly it's stomach problems. Jun got the side effects from Dexamethasone- not everyday, just on the days he was taking Dex and a few days after. 1. Continuous hiccups for about 4 hours (took metoclopramide 10mg) 2. Bloating in the stomach (took furosemide "Lasix" 40mg) 3. The worse side effect was acidity in the stomach/ like ulcers (took omeprazole 40mg before taking dex; but what also helped a lot is "Weisen-U. Weisen-U is an antacid from Japan which works wonders- check out their website: http://www.weisen-u.com.hk/ or http://www.fareastginseng.com/anweu.html ) 4. Insomnia- just took half dormicum for a 5 hour continuous sleep.
For Velcade, the only side effect Jun had was neuropathy- and very manageable. He was able to play golf almost everyday during treatment. So am glad we chose Velcade for Jun. I hope Jun will feel good for the whole duration of the treatments. Jun's CBC is also doing great. His HgB went up to 128 already from 110. Even his SPep result is so much better than before he started Velcade- still not normal, but getting there...
Regarding his rib pain, which I mentioned earlier, doctors believe that it is not connected with the MM. We took several x-rays already with 3 different hospitals, and all xrays came out good. So, maybe it's really just muscle pain from hitting the golf ball too hard. :-P
Life with MM is not as bad as we thought it would be. Of course there are some limitations already in our activities, but life really does go on. Last Friday night, Jun and I, and some of our friends, even went to a club to watch a band- and Jun had a couple of drinks, too. Our doctor allowed Jun to have a couple of alcoholic drinks during his rest week with Velcade. Jun still goes to work regularly and does his normal day to day thing. Jun's diet changed a little though. We try to totally eliminate canned goods and anything that has preservatives and of course fast food. Another change in Jun's life are the side effects, manageable, but still kinda frustrating. Of course these days, Jun is not allowed (by me ;-) ) to stay up late anymore. So all his activities are now mostly daytime activities. So far, so good. I hope this is still how we will feel during and after the high dose chemo followed by the SCT in a few months.
October 2006: Jun started experiencing major pain and pressure around his eyes followed by blood shot eyes mid September. We went to see an ophthalmologist and Jun was diagnosed with GLAUCOMA induced by Dexamethasone. Doctor gave us naphcon-a and xalatan eye drops and told us that it will go away eventually since it is only due to Dex- well, hopefully. Jun is now on his 5th cycle of Velcade and our oncologist did not give Jun Dex for this cycle- due to Jun's glaucoma. Despite Jun not taking Dex, he still has several side effects. The neuropathy is getting worse, especially in his legs. Sometimes, Jun has a difficult time walking. He also has stomach acidity and LBM. So, no more golf in the meantime.
November 2006: It's now the end of November and Jun is scheduled for Autologous SCT followed by a mini allo SCT. His harvesting will be done next week already (Nov30). Jun is in partial remission. His Spep is almost normal (just a few points off) but his B2M is still very high- 5.2. But Jun cannot tolerate the Velcade anymore. His PN is really BAD!!! Jun's last dose of Velcade was Oct 6. Since then his PN is getting worse and worse. Jun was not able to sleep for over a month without sleeping pills (dormicum). Jun takes half tab 2x a night. The pain is worse at night. But it is still around during the day. Burning, lightning, numb, chills... really painful from his knees down to his sole. We decided to see a pain management doctor last week and she gave Jun Oxycontin 10mg 3x a day. It really helped Jun. At first Jun was always sleepy. But as his body adapted to the Oxycontin, Jun was able to function really well already-- without the pain. What a relief. I don't know how long the PN will last. According to our hem-onc, with others it is gone in a couple of weeks, others stay there for life but the pain lessens thru time. So far, Jun has had the BAD PN for almost 2 months now. I sure hope it goes away soon.
I read that high B2M has the worse prognosis for MM. Jun's B2M is 5.2. Started at 5.6 pre-treatment. That's why Jun needs to have a mini-allo after his auto SCT. Good thing is Jun's brother is a perfect match. I do pray for a good outcome. Oh well... only time will tell.
December 2006: Jun had his cyclophosphomide IV last Dec 1 and GCSF injections daily for a week. The GCSF injections made Jun have slight bone pain. Good thing Jun is on Oxycontin (pain meds) so I guess that lessened the pain.
Jun just finished his stem cell harvest Dec 11 & 12. We were able to collect 9 million stem cells. That's more than enough for what Jun needs. The central line was inserted thru his inner thigh and it was not really painful. There was only very slight pain when injecting the anesthesia. It's been a week now and Jun still feels weak. Jun also had headaches and cold sweats the first 4 days after the harvest. He tried to play golf today, Dec 18, and stopped during the 16th hole due to fatigue. But at least Jun was happy to be able to get out of house arrest. ;-) Also, Jun's hair started falling today.
Good news is- Jun's PN is almost gone. We plan to lessen the Oxycontin to once a day already this week since we can't abruptly stop it.
Come January 1st, Jun will be admitted already for his transplant. I hope everything goes well with the SCT.
I am comparing our Christmas this year with last year- and what a big big change it is. With all the parties and night outs with friends last year... to quiet times spent with my husband and our baby boy and family this year.... You know what??? I am happier this year more than last year- minus my husband's MM of course. But I know without the MM, things would not be what it is now. The good thing about this MM is it has brought us closer together- the whole family. MM has made our love stronger than ever. I guess with every rainstorm - comes a beautiful rainbow. A toast to a magical Christmas for everyone!!!
January 2007: Happy New Year!!! Each new year brings so much hope - hope for peace in our chaotic world and of course good health! :-) Health is wealth. I never really realized what that saying truly meant, until my husband got diagnosed with MM. Yes, I was careful with our health in the past, but I never really knew how important it is in our lives. I mean, I always believed that bad health will come to us only when we are old and gray... not when we are young(er) and with our whole lives ahead of us. Now that's mostly all I pray for. I sure pray that this year will bring much good news to us... and to everyone fighting this disease.
All my friends say that I am very strong. Actually, I don't think I am any different from anyone else. I just know that I have no choice but to face this and make decisions with a balance of heart and mind. You are put in a situation by circumstances in your life. And you just have to face it- head on- or else you will lose. And that will mean losing something special that I hold very dear in my heart- which is my loving husband... and the most devoted and caring father for our children. It will be very devastating for me to see my baby boy grow up without his father to guide him. So what other choice do I have but to be strong? God is the one making me strong. He is the one carrying my cross for me.
Jun was admitted on January 1 for his autologous stem cell transplant infusion. Dr Salvador Abad Santos (Dr Lopez's partner) inserted Jun's central line on his inner thigh the next day (which took Doc about 20 minutes only). And may I say there was absolutely NO PAIN with the insertion. Hooray! Jun was given high dose Melphalan thru his central line on January 2 and 3. And on January 5, Dr Lopez infused Jun's stem cells (DAY 0). It was a walk in the park. The side effects that Jun got from the Melphalan were nausea, slight vomiting, and little chills - very manageable. Jun was able to eat only oatmeal and Jell-O for the next few days. Everything made him want to throw up. Can you imagine that just the thought of food makes him nauseous already? Like when Jun was reading the hospital menu, he started gagging.
On Day 5, Jun's WBC fell already to 0.1and his platelet was down to 20- which was to be expected since we are supposed to wipe out his remaining blood in his bone marrow with the melphalan. Good thing is his HGB is not so low at 105. Jun was still ambulatory- walking around his room and taking a shower every morning. Jun did not feel weak at all. Doc started giving Jun GCSF today and platelet transfusion.
On Day 7, the central line was changed to a new one. Jun had a slight fever so doc ordered some antibiotics thru IV and a blood culture- which was negative for bacterial infection. :-) Yehey!!!
On Day 9, Jun's fever was gone. Yehey Again!!! And Jun's WBC is starting to rise already. Another yehey!!! I think the slight fever was just a result of the trauma of changing his central line 2 days ago. Just maybe....
On Day 10, Jun's WBC is already 2.2 and his platelet 75. Another platelet transfusion. Doc said Jun can go home in 2 more days. All in all, I would say that the autologous SCT was a success. Jun got no mouth sores, and was able to eat real food by day 9 already. But just a little at a time. By the way, Jun's PN is completely gone and he stopped taking Oxycontin already. Thank you Lord!
On Day 11, Jun's WBC soared to 12.2 (maybe due to GCSF) and his platelet was 85 and hemoglobin was 89. Jun was given 2 units of red blood and platelet transfusion.
Day 12!!! Jun is HOME!!! WBC 9.2; Hemoglobin 105; platelet 97. Jun is still a little weak and his taste buds are still yucky..... but very glad to be home. Until the next admission- mini allo SCT after 60 days or more.... In the meantime, we are planning to take our baby boy to Hong Kong Disneyland next month. Be happy... life is too short. :-D
...Day +25 = Still no infections!!! Yehey!
Jun has maintained his weight since he got home (day+12) at 68 kgs. But today, Jun surprised me by gaining 1 kg. Hooray!!! Needless to say, it was a great struggle for Jun to gain that 1 kg. With all his side effects- consisting of severe nausea, slight vomiting, severe gagging (especially while eating) and his non-existent taste buds which make most food taste like paper and water taste like rust. Although Jun can tolerate sweet and salty food better- the stronger the taste, the better for Jun. He has been eating normal food already since he got home. Albeit small portions many times a day. Jun eats well- force-feeds himself. He even wakes up 2x in the middle of the night to eat a sandwich or fruits in can. By the way, Jun gets hungry regularly even if he is nauseous and gagging. We asked Doc how come Jun does not gain more weight despite his sedentary state and his eating enough. Doc said it's because most of the food energy goes into the regeneration of the organs / body that the high dose Melphalan destroyed.
Another side effect is Jun gets tired easily. We walk around our village after dinner and Jun gets tired after only 1 block. But at least Jun is ambulatory. He can play with our son and walk around the mall for about 45 minutes.
February 2007: Day 29 - Jun was experiencing swelling on his left leg since 3 days ago. It started on his calf and now his whole left leg is swollen. And Jun is also having fever. And his left lower abdomen is also red, swollen and painful. Our doctor immediately confined Jun to the hospital for a series of tests for his swollen leg and fever. MRI, Ultrasound, Blood Culture, Chest X-ray, CBC and Urinalysis. Doctors started injecting Jun with clexane- a blood thinner for the clots.
Day 31 - The MR Venogram test showed a complete thrombosis (clot) on his left iliac and femoral veins measuring 4cm. And a partial thrombosis (clot) on the right iliac and femoral veins including the inferior vena cava (big vein that goes to the heart) below the renal veins. The doctors believe that this was caused by Jun's immobility after the transplant. The danger to this kind of clot is a pulmonary embolism, which at its worst can cause death. All other tests came out normal. So doctors believe that the fever is caused by infection in the clot.
Day 34 - We put a vena cava filter yesterday to prevent pulmonary embolism. The procedure took less than an hour and was successful. Now all we have to do is allow Jun's body to melt the clot on it's own. Doctors say it may take time, but it will heal. In the meantime, there is nothing to worry about since Jun has the filter already and is taking heparin shots twice daily to thin his blood. Nausea and gagging is less now. And Jun has not vomited for over a week already. At least that's the good news. Hopefully we won't get anymore "surprises". =-O
April 15 2007: Jun's 100th day after SCT and we are happy to tell Y'all that he is in complete remission already. I thank the Lord for this gift of healing. I pray that the disease will stay asleep forever... or at least for a loooong time. Jun is doing very well already. His hair is starting to grow now and he is back to his old weight again of 75 kgs. His DVT is also improving very much. Jun is still taking medication for his DVT. And his last Doppler ultrasound showed that there is already an opening in the clot. Thank you Lord again and again and again.
August 2007: Jun got dengue fever - the worst kind - dengue hemorrhagic fever. It's not really connected to Myeloma. Just wanted to share... I thought Jun was going to die already. Because after giving him 2 platelet aphaeresis, his platelet was still dropping- to 17! Normal is 150-250. Jun was also having continuous gum bleeding and nose bleeding! I was praying hard... I asked God to please not like this. After surviving the Myeloma, then only dengue fever with take him away from me? Jun had a total of 6 platelet transfusions before his platelet started to rise. We stayed in the hospital for 6 torturous nights. I'm just happy that we are back home now. Jun is still on warfarin for his deep vein thrombosis. So maybe that's another reason why he is bleeding profusely as compared to other dengue patients. We are supposed to have a follow up already for Jun's Myeloma this month. But we decided to take a vacation first to the USA and will just do the tests next month. Am keeping my fingers crossed....
September 2007: We just received Jun's tests. Serum Protein Electrophoresis and Immuno Fixation Electrophoresis. Jun is still in remission. Thank you Lord. It's been 8 months now since Jun's SCT. Everything is looking well. Jun is off his medication for DVT and he has fully recovered from Dengue Fever. Life is good....
February 2008: Just got Jun's blood-work today - everything is still normal. Jun is still in complete remission. Praise God! Jun is living a normal life now. He has no maintenance medicine for MM. All he takes are vitamins and supplements. We make sure that Jun sleeps early and wakes up well rested. Also, we make sure Jun does not get too stressed out and continues to be happy and living a clean life.
He occasionally drinks a beer or 2 or a couple of glasses of wine- which doc says is fine. Jun also eats anything he wants to eat- as in anything at all- which is fine by me. :-) I guess the things we try to avoid these days are stress, smoking (even 2nd hand) and chemicals - like car smoke and insecticides. But aside from that, Jun can do and eat whatever he wants. Life is good...
May 2008: Jun has been having involuntary muscle cramps for the past 3 weeks. We did several tests, but doctors cannot find anything wrong with Jun. Maybe it's just over-golf??? We did our trimestral blood test again of CBC, urinalysis, Spep and IFE 1st week of May. All test results came out positive for complete remission except for his IFE. The result of his IFE says this: "suspicious for a monoclonal gammopathy. Interpretation: A small IgG Lambda immunoglobulin monoclonal band is detected in the Beta region". We went to Jun's onco to find out what exactly it means. Doctor Lopez said- looks like the MM is starting to come back again. =( Doc wants us to do a monthly monitoring test before discussing what steps to do next.
It's really so sad that my husband, and all other MM patients, have to go thru so much sufferings and hardships in the treatment, only to be in remission for just a year or so. When will they ever find a cure for this disease? And if they do, will the old patients still be eligible or will it be too late? I know am just venting right now. But I feel so frustrated and so not in control of the situation. I just leave it all up to God. May he give us all strength to fight and keep on fighting.
July 2008: Jun's muscle cramps are gone already. We just stopped this "immune booster" Jun has been taking for over a year now. I guess one of its side effects is muscle cramps after prolonged intake. So to all out there, be careful what you take - even if it is advertised as all natural and herbal.
We are monitoring Jun's Spep monthly because of the "not so good" IFE result. Got Jun's June SPEP result 2 weeks ago and there is a slight elevation in his beta globulin. But the overall interpretation is still no monoclonal bands detected. Doc also asked us to have urine Bence-Jones protein tested to be sure- that came out negative also. Will be doing another SPEP in 2 weeks. Keeping our fingers crossed....
September 2008: Did a bone marrow biopsy - Jun has 6% plasma cells. His CBC is still normal. No problem with kidney and no bone involvement. Doc said to continue to monitor Serum Protein Electrophoresis (SPEP) monthly so we can start treatment before Jun gets symptomatic.
December 2008: We have been monitoring Jun's SPEP, CBC, Crea and LDH monthly. So far, Crea and LDH are normal. But the HgB is 120 - slightly lower than normal - and the M-spike has gone high up. We will be seeing Jun's doctor after Christmas. Jun and I have been discussing treatment options already. I don't know what Jun's M-protein level is, because our IFE (Immuno Fixation Electrophoresis) test has no value - it's not available in the Philippines yet. So we just rely on SPEP results.
January 2009: Jun started with Velcade, Melphalan and prednisone Jan 20. Jun's protocol is to do 2 cycles of Velcade (total 8 sessions), Melphalan, prednisone and then a mini-allo stem cell transplant. So far, Jun has already done 2 sessions of Velcade. Jun does not have any side effects yet with Velcade. His taste buds became a little bad- I believe it's due to the Melphalan tablets. And Jun has a hard time sleeping at night- which am sure is due to the prednisone. But with the help of dormicum, Jun is able to sleep better.
February 2009: Jun finished his 2 cycles of Velcade, Melphalan and prednisone cocktail Feb 19. Side effects same as the 1st cycle. Had water retention for a couple of days though, so Jun took Lasix which made him pee a lot the following day. Also had knee joint pains for a few days- Jun just drank lots of hydrite tablets and Gatorade and rest. There is more fatigue also these days. Maybe due to his low hemoglobin. Surprisingly, the hemoglobin is still dropping despite the good response to the drug. Oh well.... Mini-allo transplant is scheduled in March. I pray and hope that all will turn out well. Meantime, Jun is making the most out of his treatment-free 3 weeks to play golf and enjoy life.
March 2009: Jun is finally admitted for his mini-allo stem cell transplant March 15, Sunday. Doctor Abad Santos inserted main line in his right femoral vein- as always, it was painless and done before you know it.
Jun is eating very well. No sign of nausea anymore. Actually, no sign of nausea anymore for about 3 weeks now.
There are days when Jun will be feeling weak and there are days when he is so energized. Really don't know what is causing the ups and downs. But when it's an "up" day, then we are very thankful for that beautiful day.
We still list down all of Jun's liquid input and output. He has to have an intake of 3,000 ml of liquids per day. For the past 2 days his input is 3,000+, but his output is only 1,600-1,800. So doc made Jun take lasix today.
Jun's CBC is going up and down- but Doc is not worried. So I guess I shouldn't worry, too. Doc is slowly removing Jun's meds every visit. He is now down to the ff daily meds: 20mg of prednisone 2,500mg of Magnesium Prograf - alternate 1 tab and 2 tabs everyday 1 tab of Folic Acid 5mg 1 tab Cotrimoxazole 800mg / 160mg every Mon and Thurs only 1 tab Itraconazole 100mg Doc wants the GVM to take effect already. Jun is handling the GVHD quite well. His bowel movement is not as often- sometimes only 1x a day. And the consistency is not too watery- sometimes it's even formed. So I am confident that Jun will be able to handle to GVM quite well.
Jun is excited because his 2 girls are coming home day after tomorrow for the summer. They are both studying in Vancouver. I'm glad, because this will make Jun really happy. And the best medicine is truly happiness, smiles and lots of laughter and love.
November, 2009: Am happy to say that Jun's mouth sores are gone. Also, that Jun's blood tests show that the GVHD is well under control already. Dr Lopez has been lowering the dosage of Jun's medicines every 7-14 days. Jun is now down to the ff meds per day:
Hopefully, Jun's steroids (pred) will be much lowered soon. Jun's face is bloated and has rashes. Doc said that's due to the high dosage of steroids Jun has been taking since July. His taste buds are still not back to normal. But is getting much better. Jun has been playing golf regularly and is able to live a more normal life.
January, 2010: It is now day 308 days post-transplant. The past 10 months fighting the GVHD has been one heck of a roller coaster ride. There are good days and there are bad days. During the good days, Jun feels like a "normal" person and plays golf, plays with our son and goes out with the family to the mall or out of town. But during the bad days.... Jun complains of pain, fatigue and feels sick. The GVHD is being controlled by prograf, cellcept and prednisone.
Jun has a blood test now every 2 weeks- SGPT / SGOT Total bilirubin Total Protein Creatinine Magnesium CBC with platelet And when the test show an increase in the normal range, doc increases the meds. And when all goes back to normal, doc decreases the meds- but decreases it very slowly so that GVHD is controlled. GVHD comes and goes. But Doc does not want to make the decrease sudden. Anyway, Jun is in remission so there is no need to use the GVHD to help fight the myeloma.
Jun has the ff GVHD: liver stomach muscle - am not sure if it's GVHD or the pain is a side effect of the long term use of meds. mouth dryness - cracking eye dryness.
These days, Jun is fighting muscle pain in his back, neck, arms, buttocks, and legs. Sometimes, his fingers and toes cramp and he can't move them for about a minute. It happens also while he is driving. And Jun had to pull over to relax his muscles. We do not know if this is GVHD. Doc increased his prednisone today due to the muscle pain. Hopefully this will heal the pain. Because the pain makes Jun feel sick and weak.
Also, Jun has this cough that just won't go away for 1 month already. We had a chest X-ray and everything is normal. Another thing to worry about is Jun being immuno-suppressed due to all the anti-rejection drugs. Jun contacts virus and bacteria like Velcro. Even if Jun is extra careful, he still contacts them. But with Dr Lopez around, it's not something to worry much about. Doc responds right away to our concerns. Everyone who is considering SCT has to have a compassionate doctor who will respond even in the middle of the night.
I am very thankful that Jun is still alive and well. And hopefully, after all this GVHD hullabaloo, our life can be more pleasant and normal again. Am not complaining to what's happening now, am thankful to God that he has spared my husband's life. But it would be nice to be able to go on a trip with Jun and my son- and not having to worry that he will get infections and him being so weak and fatigued. But as they say... trust in God, He knows what's best.
March, 2010: Jun is almost 1 year post-transplant and still alive and kicking. Unfortunately, the muscle pain he is experiencing for 2 months now is getting worse. And still we do not know why??? It could be GVHD, medication induced myopathy, or God knows what....
We did some blood tests and EMG NCV today- and here are the results: CPK 297 u/L normal is 30-170 CPK MM 311 normal is 30-170 (CPK MM measures skelatal muscles) Sedimentation Rate 28MM/HR normal is 0-10 TSH, FT3 and FT4 all within normal range (these are for thyroids) EMG NCV test - normal (muscle and nerve testing)
These test results mean that Jun has muscle fatigue. But we still do not know the cause. It could be due to the drugs and it could also be due to GVHD. So we are back to square one. Good thing is, the abnormal results are not high enough- so this rules out any autoimmune disease- which is what Doc was worried about.
Jun is still on prograf, cellcept and prednisone. It's almost 1 year and the chronic GVHD is still around. It's so tiring and the pain is sometimes too much. Good thing is, the myeloma is being killed by the GVHD. But it's just so hard. When the side effects of the drugs are too much, you either take pain killers or decrease the drugs. But when you decrease the drugs, then GVHD starts showing itself again. And of course, you have to be extra extra careful with virus and bacteria.
Studies show that GVHD usually lasts for 2-5 years. How I wish that Jun's GVHD will last for the minimum 2 years only. Patience.... and I believe that our lives will one day be normal again.
But all in all, I am very thankful that my husband is still alive and can still play golf and play with our 5 year old son. Yup, our son is 5 yrs old already. Jun was diagnosed when our boy Justin was only 1yr old. How time flies.
March 26, 2010: It's been a year already since Jun's mini-allo transplant. Jun is still fighting GVHD which is taking a toll on him. But so far, all is well. Last week, Jun won a golf tournament! I am so proud of him. In spite of his muscle pain, and weakness, he was able to win the class B division. See... you can really do anything as long as you focus and try your best. Dream and reach higher.... for I dream and believe that one day this will all be behind us.
May 2010: Jun started playing golf again last week after stopping for 6 weeks due to muscle pain and major neuropathy. Jun's muscle pain is gone now. Doc just gave him 40mg prednisone and 4 tablets of Prograf per day and it worked like magic. So, it's officially GvHD muscle. And to think Jun suffered the pain since January! Jun is feeling much better these days. We are slowly lowering down his Prograf and prednisone every week. Hopefully, there will be a long vacation from GvHD this time.
We also stopped taking CellCept because it is causing neuropathy in Jun's whole body. I know that it is not really a side effect of CellCept, but I guess each patient has a different side effect from each medicine. Each time Jun is feeling pain, we start our investigation on whether it is from GvHD or a side effect of his immunosuppressant drugs. It takes awhile to know since all is trial and error. Before, we would do many tests, but we got tired of all the tests- since it is always only GvHD or side effect. So it's either we bring up the drugs or we lower the drugs.
These days we are figuring out why Jun's hands are always shaking and getting cramps. Is it a side effect? And from what???
Jun is flying to Las Vegas in 2 weeks to visit his sister and to Vancouver after for his daughter's graduation from University of British Columbia. I told doc that Jun is leaving. And doc laughed and said..."you're telling me? And not asking if Jun can go?" Hahaha. I think am just so used to this Myeloma thing that it's not such a big deal anymore. As long as you are careful, there is LIFE after chemos and transplants.
Oct 2010: It's already 1 yr and 7 months after Jun's mini-allo SCT and everything is looking fine. There are still bad days- but there are much much more good days already. GVHD still comes and goes- but it's not really much of a problem anymore since we now know how to keep it controlled. Jun's last blood test showed that his liver GVHD is acting up again. But no sweat, Doc took care of it by adjusting his meds. Jun is now taking 1 prograf, 2 cellcept, 1000mg magnesium, 1 folic acid 5mg, and 1 prednisone 5mg everyday.
Jun got Cushing's syndrome because of prolonged use of prednisone. He even got a buffalo hump last month. I got scared for a minute because I did not know that it was part of Cushing's syndrome. But doc said it's ok- and then seriously started to bring down his pred. His moon face is getting smaller now- but Doc said it will take another month or 2 for it to go back to normal. Hopefully, by Christmas time, his face will go back to normal already.
Jun started going to the gym 4x a week to strengthen his muscles and to gain stamina. And yesterday, he started playing badminton again. He still plays golf 2-3x a week. What a hectic lifestyle. =) There is still muscle pain- but it's so slight that it doesn't bother Jun so much.
I hope my husband's story will give hope to all MM patients and caregivers out there. There is life after Myeloma....
January 2011: Happy New Year! It's been a loooong "roller coaster ride" year for us... and this New Year finally shed light to our big question of side effect or GVHD???
Did an SPEP 1st week of January and found out that Jun's myeloma is slowly creeping up. Since the myeloma is back, the muscle pain Jun has been feeling for so long already is actually a side effect of prednisone and not GVHD as we once thought. Doc started lowering down Jun's dosage every week to attain GVHD. From 2 prograf and 20 mg pred, we are now down to 1 prograf and 5 mg pred. The last blood test still shows no signs of GVHD.....=( We know we need GVHD to fight the myeloma. I sure hope Jun gets GVHD soon.
We also went to see a rheumatologist and a rehab doctor and confirmed that Jun has muscle atrophy and myositis. This is due to the prolonged use of steroids. Jun is now doing physical therapy everyday for a week now. The PT (physical therapist) does TENS, ultrasound, stretching and light exercises. I guess we will see the outcome in a few weeks....
I just want Jun to be able to enjoy life again without pain and fatigue. And of course to get GVHD to attain remission again.
March 2011: Got Jun's 2nd SPEP results today. Bad news- the myeloma is still rising. Jun has been experiencing muscle pain despite the lowering of prednisone. Now I am more confused than ever. Does Jun have GVHD myositis (muscle inflammation)? And if that's the case, then how come his MM is slowly rising? And if Jun has GVHD myositis, then the only treatment would be prednisone at 0.5mg/kg body weight. That means Jun has to take at least 20mg of prednisone daily. But if Jun does this, how about the Cushing syndrome? Muscle atrophy? All these are caused by prolonged use of prednisone. Then how about his myeloma? How do we bring it down? DO we have to start chemo treatment? Or do we wait for the GVHD to finally do his job?
Jun also is starting to get high blood pressure. We saw a cardiologist already. Looks like Jun is getting hypertensive due to the muscle pain. Jun also is losing weight. He is now down to 150 lbs. He used to be 170 lbs just late last year. Jun is always fatigued and tired. I think it is due to his loss of muscles. It's like his muscles shrunk and it is just bones and skin and some flesh. Meantime, my goal is to let Jun have best quality of life. How? By taking away his pain - either by increasing the prednisone or by increasing the oxycontin he is taking. Oh, another thing, there is a growth on Jun's left shoulder. We are seeing a rheuma tomorrow to get an ultrasound. It's just so many problems and not one solution. Jun said something tonight that hit me- let's just do what we have to do and NO REGRETS. Sometimes, I regret doing the allo SCT. It really changes your quality of life. But then for some, it is a godsend. I really just wanted us to be the lucky ones.... I hope that I see the light soon.
April 2011: Did another SPEP April 17 and the MM is stable. That's the good news. The bad news is- we have to continue on our treatment plan - which is no treatment at all. And allow the GVM to work. Ever since we removed all the immuno-suppressant drugs, except for 7.5mg of prednisone, Jun has been having much GVHD- well, we believe most of the symptoms he is feeling now is due to to GVHD. He is now down to 143 lbs. He has thinning of hair, very low testosterone, stomach bloating and acidity, liver GVHD, muscle GVHD, neuropathy, mouth GVHD, rashes, swollen ankles, fatigue, weakness etc etc etc. Doc wants to do another SPEP next month. And if the MM goes down, we will discuss treating the GVHD. Meantime, we closely monitor the GVHD. We asked Doc- when will you say enough GVHD? Doc said it really depends on the lab works, how Jun looks and feels and when Jun will say- "Enough GVHD." Actually, we have another option if Jun can't take the GVHD anymore. To boost the steroids and start chemo. But I believe we will stick to the GVM treatment and hope for the best first. Because of low testosterone, we had NEBIDO shots last week. That's testosterone shots. Really hope this helps. We will be monitoring testosterone monthly also. By the way, don't know what we did right. But the hypertension is gone. It just went away on its own. Strange... but good strange...
May 2011: 1st week. Jun is now 139 lbs.... Jun did a left shoulder x-ray due to the pain on his clavicle. To our surprise, they found expansile lucent and lesions on his clavicle and humerus. Our onco told us that we have to start Zometa right away and start Revlimid asap also. Since there are lesions already. Jun did Zometa infusion this afternoon. This is the 1st time we will do Zometa as there were no bone involvement before. We will also start on Revlimid tomorrow. Am actually scared with the side effects of Zometa and Revlimid. I hope Jun will be able to take it. Being so weak these days. Doc also asked us to do a skeletal survey to see the extent of the damage.
For me, there are good sides and bad sides to having an allo SCT. I am not really against it. But I know now that it is a big gamble. Because there is a big chance that the SCT won't work for a long time, and then the sufferings and hardships that go with it will far outweigh the benefits. Actually, some are really lucky that after the allo SCT, their MM stays quiet already. Looks like we are not one of the lucky ones.... I do not know what the future holds for us. But for now I am counting all our small blessings. We have each other now. And we can make each moment count.
August 2011: In the past 3 months, Jun's weight went down to as low as 125lbs because of his inability to eat. His stomach gets bloated right away even after a few bites. We went to get an ultrasound of the whole abdomen and Jun's gallbladder is contracted. You cannot see it. Then we did a total bilirubin test and his total bili is so high at 13. Normal is 1. No wonder we could not see the gallbladder during his ultrasound. It was totally contracted. Doc started Jun on Prograf and 40mg prednisone in June. It's been 2-1/2 months now and Jun's bili is almost normal. His weight is now 131 lbs. And he is eating better these days.
When doc increased prednisone to 40mg and started Revlimid in May, Jun's muscle pain went away. So we stopped using fentanyl patch by 2nd week of June. Who knows why the pain stopped? It could be that the pain was caused by muscle GVHD and since we increased pred, the pain went away. Now that Jun's pred is down to 15mg, the muscle cramps are starting again and the pain is back. We don't know if this is a side effect of the Revlimid or the muscle GVHD coming back. It's so very frustrating. If you bring down the prednisone, the muscle pain comes back. If you increase the prednisone, you get muscle wasting. So where is the balance???
What is frustrating is we are treating both GVHD and MM at the same time. I always heard that when you have GVHD, it keeps your MM at bay. So how come we have major GVHD and still have MM? It does not make sense. If I knew then what I know now, we would definitely choose tandem auto SCT's, instead of an auto + mini allo. Well, what's done is done...
Good news is, Jun is responding well to Revlimid. And his Spep now shows 0.48 g/dL from 1.27g/dL in April. So hurray for that.
May 2012: It's been over 1 year now that Jun has been on Rev/Pred... not Dex. Because we are using the prednisone for the GVHD. So far, the spike started going down and was stable at around 0.60g/dl for 5 months. Last month the spike started slowly going up. So doc changed our protocol to Rev/Dex with Pred during rest week. Let's see how this goes.
So far we are still battling GVHD and muscle problems. Jun's muscles are getting worse - and we still do not know what is causing it. Even his voice has changed to a raspy voice - looks like the throat muscle is constricting his voice box? We are now thinking that the muscle problems could be caused by the prolonged use of Prograf.
Jun has a difficult time walking for a long time. His neck muscles get tired from holding up his head. So he walks with his head facing down. His legs are now skinny like a crow and always stiff and cold. His toes cannot bend anymore due to stiffness.
We are leaving for Canada/USA this weekend for a month. Doc agreed to have a month of chemo rest for us, yehey. Hopefully, the muscle problem gets better. If not, then maybe we should change the Prograf to another anti-GVHD meds. Everything is trial and error here.
The lump on his left shoulder is getting bigger - we did 20 rounds of radiation. but it did not get smaller at all. When we come back from our vacation, we will look into surgery already.
Life has been hard for Jun and me. But it's still Life. We take a day at a time. During the bad days, we hope for the good days. And during the good days, we make the most out of it. This is our "new normal" now.
My loving husband, Jun, passed away April 15, 2013 in the presence of his loved ones.
He was at the hospital for 3 nights, starting April 12, to do some tests due to inflamed eyelids. On April 13, he was diagnosed as having a mass on the brain stem that is causing his eyelids to bulge and his speech to slur. And on April 15 he was diagnosed as having a mass in his trachea. All these were unsymptomatic until his eyelids started bulging on April 2. At first we thought it was just an insect bite. But it slowly became worse, that's why we suspected something else.
Blood tests showed increasing spike - but not enough to cause alarm. We did and MRI and Xrays and CT's. There were several masses already found, which were asymptomatic. The GVHD was still flaring up, but MM was increasing despite the GVHD. He never recovered from the muscle GVHD, and he just continued to deteriorate due to the muscle GVHD. We tried rituximab in March, but we never got the chance to know if it worked or not. =( Too bad... we were so hopeful that the rituximab would help the GVHD, then we could concentrate on treating the MM. I guess in our case, GVHD did NOT help control the MM. But we suffered so much from GVHD. If there is one thing I regret in this journey of ours, it is that we did the allo SCT. It did not help the MM but it gave Jun so much unnecessary suffering.
Jun's death was graceful. He had his dinner at about 7:30pm - he was still able to eat full meals up to the end - which I will forever be grateful. Around 8pm, he was trying to expel phlegm. He vomited with phlegm and then after a few minutes he slumped and was in a coma. He aspirated. The neuro residents were trying to get him to respond, but no response. All the while, his oxygen level started dropping and his C02 started increasing. They asked us if we wanted to intubate. He threw up again at almost 9pm. And the doctors told us that we would have to decide soon whether to intubate or not. We decided not to... it would just prolong his suffering. And at 9:08pm Jun went into arrest. All these while he was in a coma and thankfully did not suffer.
I will always be grateful to the Lord for the way Jun passed. He had a lovely dinner, he was laughing with his kids and family all day, he went into a coma which made him not feel the suffering. Now I have to start a new chapter in my life. How does one go on living without the love of his/her life? One day at a time...
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