No more adjuvant

Barbaraek

We've booked a bed in the hospital for the last 2 days and will be here at least through the weekend. We just couldn't manage the side effects of pain, dehydration, and vomiting at home. These side effects are from the 1st of 3 planned rounds of adjuvant chemotherapy with Cisplatin and 5FU. All along my husband has been on the far end of the bell curve for reactions to radiation and chemo. Last month he was in the hospital with neutropenic fever from chemo.

 

Today the docs are recommending that we not continue with the adjuvant chemotherapy. His system just can't handle the toxicity of the chemo drugs. I am ok with it, I really am. My husband I know is a little disappointed. He wanted to do everything possible to make sure the tumor is gone, gone, gone. 

 

For now we need to get through these next few days in the hospital, than get home and start focusing on improving his quality of life. we won't have our first scans until the middle of October. Until then we're going to hang our hat on the fact that his tumor symptoms vastly decreased with the initial treatment of radiation and Cisplatin.

 

Barbara

 

MrsBD

Chemo

I'm sorry your husband is having such a rough time with the therapy. Because of renal insufficiency, my doctors decided to use Erbitux rather than platinum based drugs. It worked for me and the side effects weren't as debilitating. There may be other options too. Recently I ran across some information about micro therapy in which lower doses of chemo drugs are given to avoid major side effects. Without doing more research, it's difficult to determine the success rate of such an approach, but here is the link if you want to check it out yourself. envita.com

debbiejeanne

barb, i'm sorry your hubby is

barb, i'm sorry your hubby is so sick.  its sad what tx does to us in order to free us of cancer.  i pray he is feeling better very soon.  this road is so rough, but remind him, that he will get down it and see the light at the end of the tunnel.  and we are all on the sidelines cheering him on!!

God bless and be with you both,

dj

phrannie51

I'm sure hubby is

is disappointed in not finishing the adjuvant chemo....tho, being an oncologist himself, he knows the cure can kill a person, too....when I was going through treatment, many people started at the same time as I did....but they were done the minute rads were over, and I was still facing another 2 months of treatment...I didn't get it!!  I never have understood why NPC patients have to go through the adjuvant.  He got one done, so it's not like it was skipped all together.  After the second one, I spent 3 weeks thinking that maybe I'd skip the last one, too....I didn't decide to go for it until the day before I did it....

Now we know why they call it 5 FU!!  The FU part was probably coined by patients and not the scientists who thought it up!!

p

wmc

Sorry to hear that

They [doctors] say that H&N is the 2nd worse treatment you can go through. The radiation and chemo can be so brutal  and such a rough road to go down. When he gets over some of the effects and gets stronger, he will do much better. Remember Never give up, he just needs a rest and build up his strength. We will keep you both in thought and prayers. 
Bill

corleone

Hi Barbara

I am a NPC survivor (2.5 years post treatment). I was T2N2 (stage III), treated with concurrent radiation and cisplatin (only 2 cycles, 3^rd was too ototoxic). Then I had the adjuvant carboplatin and 5FU, I had no major side effects.

When you mentioned about neutropenia caused probably by 5FU, I wonder if he was among the unlucky ones with the DPD (enzyme involved in the catabolism of 5FU) deficiency.

 

I also wonder, aren’t’ they (onco team) considering any alternatives for chemo (like gemcitabine and carboplatin)? Or some early phase clinical trials with immune checkpoint inhibitors?

avisemi

Barbara,
I'm so sorry to hear

Barbara,

I'm so sorry to hear this. I know how horrible this is. Last year I could have written your post. Dima had 3 rounda of induction chemo with taxotere, cisplatin and 5 FU. Each round landed us in the hospital with infections, fevers and all sorts of problems. The doctor reduced the dosis the 3rd round and that help a little.  Though, this is behind us now and it will be behind you too. This will pass soon. 

Be encouraged. He will be better soon. 

Barbaraek

corleone said:

Hi Barbara

I am a NPC survivor (2.5 years post treatment). I was T2N2 (stage III), treated with concurrent radiation and cisplatin (only 2 cycles, 3^rd was too ototoxic). Then I had the adjuvant carboplatin and 5FU, I had no major side effects.

When you mentioned about neutropenia caused probably by 5FU, I wonder if he was among the unlucky ones with the DPD (enzyme involved in the catabolism of 5FU) deficiency.

 

I also wonder, aren’t’ they (onco team) considering any alternatives for chemo (like gemcitabine and carboplatin)? Or some early phase clinical trials with immune checkpoint inhibitors?

Neutropenia with Cisplatin only

Actually, the neutropenia happened with his second dose of Cisplatin only, which took place during week #4 of radiation. We had 2 rounds of Cisplatin because the 35 radiation tx were compressed into 6 weeks.

For #1 of adjuvant, he received Cisplatin and 5FU...and a shot of Neulasta. At first his white cell count was fine, but now even with the Neulasta it has plummeted from 25 to 2. He does not have a DPD deficiency...he just seems to be on the far end of the bell curve for reacting to chemotherapy.

There was some discussion of trying a different chemotherapy drug, but it seemed to be a choice between starting with them, not switching to them if this didn't work. We'll have to see - we'll reassess in another week or two...but I think we're done.

We are at a national comprehensive cancer center, so if there are applicable clinical trials we'll hear about them. I do know they ran a genetic panel on the biopsied tumor tissue and didn't find any genetic markers to indicate one drug/inhibitor would be best.

The radiation oncologist feels like he achieved good local control, but we won't really know until the scans in October. They do offer the gamma knife here if we have need of it in the future.

I'm learning how different and unique everyone's journey is. While we can draw hope and encouragement and information from other's experiences - we each have to navigate our own road.

Barbara

 

corleone

Barbaraek said:

Neutropenia with Cisplatin only

Actually, the neutropenia happened with his second dose of Cisplatin only, which took place during week #4 of radiation. We had 2 rounds of Cisplatin because the 35 radiation tx were compressed into 6 weeks.

For #1 of adjuvant, he received Cisplatin and 5FU...and a shot of Neulasta. At first his white cell count was fine, but now even with the Neulasta it has plummeted from 25 to 2. He does not have a DPD deficiency...he just seems to be on the far end of the bell curve for reacting to chemotherapy.

There was some discussion of trying a different chemotherapy drug, but it seemed to be a choice between starting with them, not switching to them if this didn't work. We'll have to see - we'll reassess in another week or two...but I think we're done.

We are at a national comprehensive cancer center, so if there are applicable clinical trials we'll hear about them. I do know they ran a genetic panel on the biopsied tumor tissue and didn't find any genetic markers to indicate one drug/inhibitor would be best.

The radiation oncologist feels like he achieved good local control, but we won't really know until the scans in October. They do offer the gamma knife here if we have need of it in the future.

I'm learning how different and unique everyone's journey is. While we can draw hope and encouragement and information from other's experiences - we each have to navigate our own road.

Barbara

 

Thanks for clarifications

For the (immunotherapy) trials I suggested above, there is no requirement of any particular mutation (like EGFR, ROS1, ELK, NTRK, KRAS, that’s what I mean). On a previous reply (to someone else) I suggested something that "could" work on any solid tumors (H&N included), not sure if you’ve seen that, if not there you go:

From what I’ve seen, various Immunotherapy Phase I studies are recruiting. These are targeting various receptors implicated in immune response, like PD1, CTL4, OX40 or their ligands. Ideally a combined therapy (like PD1 and CTL4 or OX40), because the response is much stronger in terms of activating the immune response against tumor cells. The downside is that these are phase I studies, meaning that it depends what part of the study is enrolling (like escalation, or expansion). During escalation, they are trying to figure out the maximum tolerated dose, so you might end up with a sub-optimal dose. During expansion there is usually a requirement for mandatory biopsies, but the optimal dose is already known. In general Immunotherapy is well tolerated (better than classical chemo anyway); if unlucky you have some adverse events caused by flaring up inflammation. You should see if any of the above are available in your area.

I assume that this was Epstein Barr positive. There have been some (highly experimental) attempts to use autologous EBV-specific CTL (virus-specific CTL were reactivated in vitro), but that’s unlikely, I was told it’s very expensive, and since there is no new drug involved in this particular case, no interest from big pharma, so no money either. But just ask, who knows.