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March 13, 2013 at 1:38 pm #21101
My husband was diagnosed with stage IIB melanoma with no lymp node involvement 3 years ago. All went well until Nov. 2012. He was diagnosed with severe anemia, hospitalized for teansfusions, and endoscopy. Endoscopy showed large bleeding tumor in stomach. You can only imagine our shock. Fortunately we live on Long Island in NY, and we’re able to get him into MSKCC asap. He has received 30 units of blood to date, but bleeding was finally alleviated after 12 doses of radiation to his stomach. He has also completed 4 doses of IPpy. Unfortunately after suffering for 3 months from the severe side effects of extreme anemia (exhaustion and difficulty breathing), he has spent the last month suffering from constant nausea and vomitting and has lost 35 pounds since this nightmare began. A week ago he started running a temp off and on of 101.5. He was admitted to MSKCC for IV hydration, infection testing, and precautionary IV antibiotics. No infection was identified and a week later the fever is back and he is back in the hospital. Docs are now thinking that he has ‘tumor fever’, as no other cause for fever has been identified. Since CAT frm a week ago showed tumor growth (as opposed to reduction), the docs have decided to begin standard chemo today as an inpatient. Hopefully the chemo will shrink the tumors (especially stomach one) enough that fevers will resolve and he will have a bit more room in his stomach to for food and liquid. Hopefully 6 weeks after 2nd round of chemo is complete, he will be enrolled in anti pd1 trial. We will do anything to save/extend his life. Anyone else have similar experience/and or suggestions? We would greatly appreciate any and all info and suggestions. Good bless all that are living/dealing with this disgusting disease.March 13, 2013 at 2:15 pm #59602AnonymousGuest Welcome to the group but I’m so sorry you have to become a member. There are many here with lots of experience born wisdom to help.
Sounds like your Dad needed quick intervention to stop the immediate problem which was the bleeding. The melanoma teams at MSK are fantastic. Dad’s in good hands.
I assume that he tested negative for the BRAF mutation to his particular disease as a BRAF inhibitor drug would have been a great choice to try to shrink the tumors quickly as opposed to radiation which, while effective, can take some time. Also, don’t be shy about asking why they want to do chemo (BTW, which one) prior to PD1 as opposed to doing PD1 directly (again, to shrink the tumors quickly?). And why 6 weeks instead of 4 weeks out from chemo before starting PD1?
But I’m just speculating. If you could share the rationales for why the MSK team is doing what they’re doing for your Dad, that’s helpful to the rest of us here. I’m certain that, with the advent of many promising and effect new treatments for melanoma, there is occuring a rapid evolution in approaches to treatment for this truly ugly disease and any intell we can get from the front line, high tech teams like MSK is much appreciated, I’m sure, by all.
Good luck, please keep posting (and post on the caregivers forum so we can help you in the journey) and God Bless.
JeffMarch 13, 2013 at 2:58 pm #59603Catherine PooleKeymaster
As Jeff suggests, you are in good hands at MSKCC. I guess surgery was out of the question because of his weakened state. I would be curious as to what chemo they have prescribed as well. His functioning level maybe too low for a clinical trial of PD1. I’m just guessing. But try to find out what therapy he is currently on and his BRAF status. We’re here to help you.March 13, 2013 at 3:10 pm #59604erinmay22Participant Sorry to hear about all that your husband is going thru. In May last year I became severely anemic. Was hospitalized to receive a few units of blood. At that point it was decided if I could keep my hemoglobin stable they would try systematic course of treatment vs. surgery (due to the surgeon not being sure she could remove everything).
Started Zelboraf end of May last year and was on that until Sept. when the tumor started to grow again. Had surgery that removed about 8″ of my small intestine along with a rather large tumor. They weren’t able to remove everything and I started Ipi end of Sept 2012. Did 4 rounds of that and Dec still showed growth. I started the anti-pd1 trial end of Jan of this year. Scans will be in April. Hopefully they can get him enrolled in that trial asap. I don’t know who your onc is there but I was told there are several other new trials coming there… may want to ask what are plans a, b, c etc!
Best of luck!
ErinMarch 13, 2013 at 5:15 pm #59605
Thank you all for responding so quickly and em pathetically. In my rush to post I obviously omitted several details. My husband is BRAF negative. They only did radiation to try to stop the bleeding. If it hadn’t stopped, they were going to remove his stomach. The tumors themselves are inoperable due to size, location, and number. He was scheduled to start PD1 the first week in April. Unfortunately the stomach issues have gotten so bad, he is barely able to eat or drink anything. Since they believe that he now has ‘tumor fever’, his onc team has decided (and we agree) that they need to get more aggressive NOW. While the chemo (cisplatin, dacarbazine, & vin blastine probably won’t extend his life, it may shrink the tumors enough to resolve nutrition and hydration issues and thereby improve the quality of his life until ippi kicks in and or he can start anti pd1 trial. I’m not 100% sure of the clean out time between chemo and pd1, but I thought it was 6 weeks. Could be less. I will check that out online. Can’t say enough about his onc team and the care he is receiving at MSKCC. We consider ourselves very blessed to have access to such an outstanding institution. Please add my husband to your prayers, as we will add you and your loved ones to ours…March 13, 2013 at 5:44 pm #59606 Erin,
I pray that the anti pd1 works for you! Keep the faith and never stop fighting! You are in our prayers…March 14, 2013 at 12:50 pm #59607
Good morning all. My husband Bob started chemo yesterday as an in patient. The docs have given us an IDEa of what to expect re side effects, but I’m hoping someone on this forum may be able to provide some first hand knowledge.
I mean, we’ve already dealt with ipi and radiation, and still aren’t sure which of bob’s symptoms are actually from the stomach tumor itself, the radiation, or the ippi.
Has anyone else dealt with met melanoma in the stomach?
How about the chemo drugs bob is now receiving? How soon can we expect side effects and how bad may they be?
Please share anything you know, as I’m scared to death, worried sick, and losing my mind.March 14, 2013 at 12:51 pm #59608
Hate to be a pest, but does anyone know anything about ‘tumor fever’? Ty…March 14, 2013 at 3:40 pm #59609GillyParticipant Hi have no experience myself but here is something i found :March 14, 2013 at 4:02 pm #59610AnonymousGuest Sanda:
I cannot speak about the stomach tumors but I can speak to the chemo. My wife Rachel had the same chemo as your husband for her first treatment except she took Temador, which is a pill form of dacarbazine. We chose chemo first because her melanoma was mucosal (melanoma of the mucous membrane in her sinus), very aggressive and we wanted to knock it back to give time for IPI and PD1. Her chemo was a “fractionated” dose, meaning it was given in a reduced dose but over an extended period (5 days, in the hospital). This was for two reasons. First, it’s suppose to be more effective over an extended period and second, as cisplatin is a “rough” chemo, it’s easier to tollerate and recovery is quicker.
Rachel tollerated it extremely well. Managing her blood pressure during treatment and the standard low blood counts about 1-2 weeks out from each round were the only real side effects. It did start to wear her out after the 5th round ( a “round” was 1 week “on” followed by two weeks “off”) though. The chemo did indeed slow the cancer down considerably and bought time to give her IPI and a really good shot at TIL (excluded for a 12 year old, cured, breast cancer diagnosis) and PD1 (excluded for two tiny brain mets discovered right before starting infusions).
Hope this helps.
JeffMarch 14, 2013 at 4:47 pm #59611
Thank you so much for the info Jeff.
I was reading the messages on the care givers forum until 2:30 a.m. this morning and saw many of your posts. I am sooooo sorry for the loss of your wife. I can’t even allow my brain to take me to that place…
Bob will be receiving 2 rounds of the chemo (4 days each), and will be receiving IV fluids 3 days a week on an outpatient basis and an injection for his white cell count, during the week following treatments.
Hopefully he will get anti pd1 in a trial being run at mskcc, 4 weeks after the last round of chemo.March 14, 2013 at 5:03 pm #59612
Thanks for the link on fever. It was actually very helpful.March 15, 2013 at 4:05 am #59613
Just wanted to post an update on Bob. Today was his 2nd day of chemo and I’m happy to report that he hasn’t experienced any side effects as of yet. In fact, the last 2 days have been better than most of the last 4 months. Not surprising considering he always feel much better after being well hydrated. Docs also added Ativan to his med arsenal, as it apparently helps with nausea. He’s been on Reglan and Zofran for over a month, but the combo was not working well for him.
Can anyone tell me how long it generally takes for chemo side effects to act up and how long they may last? It’s so great to see him feeling better and able to keep down the small amounts of food and fluids that he’s taking in. I realize that this will probably get worse before it gets better, but am praying that these good days will help sustain him through the bad.March 25, 2013 at 3:26 am #59614
What a week bob has had. Chemo side effects (we think) kicked in last Tues. and progressively got worse until today. I have never seen anyone sooooo sick. Nausea, vomitting, diarrhea, extremely low BP and white cell counts (.2) caused bob to be readmitted To MSKCC on Thurs. morning. He was so ill yesterday, the docs asked us about his feelings on rescucitation and being placed on a vent. Have never been so upset in my life. Gradually started to become more alert last night after discontinuing Ativan, 1 unit of platelets, 2 units of whole blood, low dose of steroids, antibiotics, and something to boost white cell count. This morning bob asked us to turn the tv on and began conversing. As the day progressed he started eating for the first time in more than 48 hours. By tonight he was eating some of a chicken pot pie! His blood counts, electrolytes and bp are all steadily increasing. I feel like we experienced a miracle. Hopefully he continues to improve and gets his strength back enough to get into a PD1 trial. He will NEVER do chemo again.March 25, 2013 at 7:24 am #59615GillyParticipant Hi – so sorry for your dreadful 48 hours – and very glad that he is feeling so much better – Chemo can be brutal !! All the best to you both.
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