PLEADING (Feels He Cannot Wait For DFCI)

[Believe51]

Girls, I am asking for a quick response if you all could. I am the caregiver and feel the only advice I can give to my husband is from you, my warriors! We went to his 2nd opinion with another Oncologist on the 19th, very spiritual man with great insight for cancer and one thing he did say is that he feels treatment choices can wait until Dana Farber on July 2. First he wanted to get more info and we wanted a 2nd opinion from him; another Oncologist nearby with an unbias approach to the situation (our Oncologist went from private practice to Chief Oncologist and Professor to a Cancer Hospital=really do not wanna leave him!) Both doctors said that they think the cancer can wait until our appointment at DFCI and so did we.

NOT!!!! Hubby is telling me that he feels more bone pain than he did at dx. His last treatment of Taxotere was 4/12, that seems to be a LONG TIME TO US!!! Today he is getting stat x-rays to check those spots for possible radiation. Will radiation interfere with his need to wait for DFCI appointment & treatment suggestions? Should I try to persuade him to wait for radiation? He was fine last week and thought he could wait. Whatever he choses I will respect his decision, it is his body and he is the only one that knows how he feels. If you talked to me 2 weeks ago I would have said we have time and he can wait, that we have hope and we are on top of our game. Today I would say that complete fear has encompassed my soul!! Tough job being a caregiver, not complaining though because I always tell him that if he had to get sick then I am happy I am the women that would see him through! I went nuts trying to book these appointments, faxing, phone tag, interuptions during work, gathering records, mailing discs, applying for DFCI approvals, e-mailing doctors and institutes........no one knows better than YOU. Again, not complaining just voicing my fear of losing assistance in our new treatment stategy from DFCI. If we have to start chemo then that is what we will do, but I do fear being removed from their care.

He may be having some anxiety about the pain and maybe thinking the cancer is multiplying out of control, and it could certainly be. I am worried that since we had to cancel an appointment in November 2006 because he was so ill he could not wait for a 2nd opinion, that Dana Farber may not allow us to book any more appointments or disqualify us for future clinical trials if we go there having radiation or being on a new chemo plan.. I do not want him to cut his nose despite his face. Sorry this is so long, I am blown away at the sudden urgency, yet I totally understand because he knew he was sick then and he knows he feels worse now.

Is there anything I can say to help him to wait? Should we go ahead & start chemo again despite having to wait for DFCI? I know the decision is his, "it is all about him"!! Any suggestions or ideas will be appreciated. Haven't been this petrified since we first heard the word CANCER and my fears are interferring with my normally rational thoughts. Crying inside and heart is bleeding. So sorry for you girls to hear such a desperate post, I know sometimes I make you cry and I am sorry for that too, but no one knows these things better than My Angels!!

Tomorrow is my birthday June 23 and I think you all know what I want for my B-day gift!! Until we talk again do not worry about me girls, for I always have and always will still BELIEVE!!!!

[tousled1]

I feel the anguish in your post. How lucky your husband is to have such a wonderful caregiver. I'm not a doctor but I feel that waiting for the July 2nd consultant will do no harm. July 2nd is just around the corner and if I'm correct in reading your post, your husband is still receiving Herceptin, Zometa and Tamoxifen. I can certainly understand your husband's concern with the increased pain as I suffer from severe bone pain myself. I just had a bone scan to rule out bone mets -- luckily it's not cancer. Your husband's increased pain may be caused by degenerative changes not related to the cancer. I don't know what you can say to alleviate his fears because I know first hand that words do not help. If the oncologist thinks treatment can wait until July 2 then I would have to trust that decision. Although the taxatore has been stopped, your husband still has the benefit of the other drugs. Again, I applaud you for your dedication in being such a great caregiver. Caregivers just don't seem to get the credit that they so deserve.

[Barbara H.]

I am also a patient at Dana Farber. I also suggest that your husband wait. However, I would call the office of the doctor he is going to see and explain his fears and the pain he is having. There might be a possibility to move up his appointment.
Good luck,
Barbara H.

[SoCalGal]

I agree with Barbara. Put a call in to Dana Farber. Ask to speak with the Doctor that you will be seeing - if he's unavailable ask for a call back for advice on what HE WANTS you to do. I think if you pose your question/call to his nurse or assistant and say you are not sure what "he'd" (the new doc) would want you to do about these new symptoms (pain, etc.) that you will get a response. I would also say that your referring doctor said you should call the new doctor for advice. I would also say that you are worried and having a gut feeling that he needs to be seen NEXT week - not JULY2nd.

Okay - that being said, I am pretty sure that toughing out the week will not adversely effect his prognosis - in other words it's okay to wait except that waiting with pain & fear is a HORRIBLE place to be.

I can't imagine the isolation that your husband must feel as a MAN with this disease. I know how isolated I feel and I have such a giant support community everywhere I look. Please tell your husband to stay strong and to channel our energy in riding out the week!
Flori

[Bev]

My gut feeling is that gut feelings are usually right on. Great advice from all. If you can maybe offer to to do standby, if someone cancels. Men are more more reserved about iiterating complaints. Is there a real advantage waiting for DFCI? Are they doing a revolutionary treatment plan?

Well you know it's like all C treatment, you have to study your facts quickly and make the best decision you can. So find peace in that you're doing the best you can. Bev

[chrisy]

Hi Marie,
If I am understanding the dates in your "signature", your husband is having an MRI of his head (or is it skull?) and also having radiation both next week. And he currently has an appt at DFCI Monday of the following week. Right?

Waiting is just the hardest thing - especially when having symptoms. It definitely makes the mind race. It's so hard to not imagine the cancer just going crazy behind your back.

On the other hand, you have 2 oncologists telling you he can wait another week. I've had oncs tell me that, too - and part of my problem is that I always see this as urgent and want it taken care of NOW. Actually yesterday would be better! Although for me it's hard to hear "it's ok to wait a week", it is also somewhat reassuring.

I like the suggestions of seeing if you can waitlist, or at least let the doctor know your concerns. Although I know it's easy for me to say, but you are talking about not even a week and a half - and in the meantime you are also getting more info with the MRI. This will help in whatever decision process.

I don't know if you have your eye on something specific in terms of a treatment plan from DFCI, but if you are thinking of a some sort of chemo trial, getting a chemo treatment next week (even if you could!) might preclude getting into a trial, or at least delay it. The trial I'm in required 2 weeks since your last chemo. Besides, what chemo would you even do? I thought part of your goal for getting the 2nd opinion was to get guidance on WHAT chemo, if any, to use. I'm not sure if getting radiation might also cause a problem, so it's a good idea to try and get a green light on that if you're considering it.

I wouldn't worry about being blacklisted by Dana Farber - the very nature of the beast is that crap happens, I'm sure they understand this. I'd be astonished if they refused to take appointments for him or DQ him from future trials unless the trial protocols didn't fit based on the chemo he has taken (and note my comment above)

Keep the faith - I know you will.

[Believe51]

Yes all of my Loves, he is going to wait until 7/2 for Dana Farber. When he had an emergency visit to his Oncologist on 6/22 (first visit I did not attend still in trama 'bout it) he said: "Yes I am going to put you on a chemo regime AFTER DFCI, for now I will only offer a series of radiation in the lower spine". When we went to the Radiologist he explained the side effects vs. benefits. Hubby chose to wait even for radiation we do not want to exhaust any options and there is no dire need for it with DFCI in the near future. The only option at the time was the rads to lower spine and he's waiting on that.

Thank You My Angels for the advice and support, we love you all!! So glad the doctor was firm. Also, when I left work to go and pick him up for the Radiologist appointment he was sitting in his chair at home. Soon as I walked in he said "Oohhh, I don't wanna go, I don't wanna go!" Firmly and gently I handed him his sneakers! God this man is so cute, well that was until we went to the appointment, all through it he said I would pay!!!!!!! (I know, I'm so mean!) I bought him lunch at a quaint little deli and called it even!

We went on to have a spectacular day!!

Everlastingly....Believe51...(Marie G)

[kacey]

Marie--I haven't replied before because I haven't had the experience that you are going through I'm so happy that he is waiting since you don't want to mess up any trial that he may get into. I will be praying for you both.
Kacey

[mslinda]

Marie, I also haven't had the experience you are going through. Also I haven't been through what your husband is going through, other than having bc. My hasband had had different things, but nothing so serious as this.

I just want to say how much I admire you. I will be praying for you and your husband. May you find great results with Dana Farber. That will be my prayer specifically.

Love and best wishes to you and your wonderful husband.

Linda Nance
S. Mississippi

[Believe51]

From the bottom of our hearts and deep from our souls we want to thank you all for your unconditional love, knowledge, prayers and the gift of your friendships.

Thanks to all our Angels you are surely Warriors!!

Waiting For A Miracle..>>Believe51..(Marie G)

[caya]

Marie,

How did the appointment go at Dana Farber. I am praying for good news for your DH.

Wishing all the best for the both of you,
Caya